/And All

December 18, 2001

Hi ,

Thank you so much for the post you sent me the other day. I am sorry it has

taken me so long to respond but my server has been down for a few days so I

haven't been able to get on. I have also put myself on no mail for right

now because I am not doing very well and reading all of the posts everyday

is just to exhausting for me right now. I read your post with a lot of

interest and I must say, a lot of fear. Let me tell you a little about me

and what is happening right now-- it is very similar to what you wrote to

me. I started losing my voice 4.5 years ago. In that time, I have only had

a voice off and on for about 6 months and have had no voice (other than a

whisper) for 13 months now. I was not Dx. with Rp until June of this year.

One of my problems is that my husband is military and I have to use their

facility and they just kept ignoring me. I finally found RP on the internet

and decided to fly to see Dr. Trentham on my own-- at my expense, in June.

I now see a civialian Rhuematologist, ONLY because the base we are at does

not have one and although she doesn't know anything about RP she is willing

to learn and calls Dr. Trentham when she needs to. I started on

Methotrexate pills and Prednisone in June and showed a SLOW progress for

several weeks-- I didn't get my voice back, but the overwhelming fatigue and

Shortness of breath and severe nausea did show some improvement. After

several weeks (maybe 2-3 months) I seemed to plateau and didn't get better

but didn't get worse. I had a few flares but I wasn't doing to bad. About

a month ago, I seemed to start spiraling out of control with my symptoms

again-- Voice got worse, daily fevers again, worsening shortness of breath,

fatigue to the point that I can't hardly hold my head up some days and the

ever present nausea. I saw my Rhuematologist last week and she was

extremely upset by the way I looked and the way my breathing sounded and

could visibly see that just talking caused significant shortness of breath.

She wanted me to see a Pulmonoligist and have repeat PFT'S done ASAP because

she feels that my Trachea is getting weaker. It just so happens that her

husband is a Pulmonoligist, very familiar with my case-- (As she has told

me, they talk about me in bed at night!!!!!) so I contacted TRICARE (my

military insurance) who said that my primary care physician on base had to

refer me to him and they would approve it. To make a LONG story short, my

Primary Care Physician is somewhere playing war so the DR. taking her calls

made the decision that I don't need to see a Pulmonoligist or have PFT's

done right now, BUT HE WOULD BE HAPPY TO SEE ME ON JANUARY 2nd!!!!!!! I

fought as much as I could but I honestly don't have the energy to battle

anymore with these people. Right now, all of my energy is consumed with

breathing, walking and the few words I say every day!! What I really wanted

to ask, besides your advice-- or anyone else's advice-- is did you have a

problem with Spasms of your Trachea when you were having all of your

shortness of breath? Mine are happening more and more often and every time

it happens the Shortness of breath seems to get worse!!! Any advice you or

anyone can give me would be helpful. I am going to stay on no-mail through

the holidays but will be checking my e-mail daily. Please e-mail me at

angelhearts61@...!!

Thanks to All

Kathi

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December 18, 2001